It’s been a busy doctor appointment week and the week isn’t even over yet.  More follow ups today. My neuro oncologist feels comfortable starting LP with IT chemo again, starting next week.  Fingers crossed no neuro leakage.  I am nervous about it but I guess forward we must.  The doctors are saying that the clot has dissipated completely which is amazing.  They still want me to continue on blood thinner shots and anti seizure meds until at least December, at which time we will do another MRI and re-assess the results to see if we can come off of some meds.  For them since the side effects have been minimal they want to be better safe than sorry.  I am on 13 meds right now (not counting chemo) so who knows what side effects I am feeling from what.

I can’t believe it but it is October 2.  Happy 21st Birthday to my little brother.  WOW.  I can’t believe how much time has past.

I am feeling exhausted lately.  More so than I expected I would be.  I feel just so lethargic.  Maybe it is the change in temps that are effecting me as well?  Who knows.  I am napping more and going to bed even earlier than usual.  haha, I know since I am already in bed at about 8PM.

It’s hard to understand how everything effects people differently.  I deal with things in a very inappropriate way by usually saying some very sarcastic comments that makes others very uncomfortable but it’s how I deflect.  I forget that some people don’t burry their feelings down.  I wasn’t really raised to show/feel emotion like normal people.  You keep that shit buried inside and don’t ever talk about it again.  I think it’s the Asian part of me.  I can’t pretend to understand how people process information, especially emotion.  It’s so different for everyone.  I try to be respectful and understanding but my brain doesn’t always work that way.  I guess I am just a dick.

But some positive news from last Friday’s doctor appointment.  My follow up MRI came back with the clot dissipating completely.  They show no signs of any stroke neurologically speaking.  So two neuro appointment follow ups this week to find out more info and if can come off the blood thinner shots and anti-seizure meds.  Baby steps.

Since I have been re-inserting myself into the real world, I have been surprised how many people come up to me and ask if I have cancer.  All women, older.  Then they proceed to tell me what they have gone through.  It is amazing that many people have had cancer.  I mean it’s really not, at the same time.  How did these complete strangers become so comfortable talking about their stories?  Does it come with age? Remission? Are they just so over it, that it doesn’t matter anymore?  Everyday someone knew comes up to me to share their story.  It’s so crazy to me.  I am not sure why but it just is.

Hopefully, the clot in my brain has dissipated even more than the last scan about a month ago.  That would be great to get off these blood thinners soon enough.  My stomach looks like I have been beating myself and I am running out of “good” spots for the shot.  Since day one of this course nausea has come back along with some joint pain, pink pee and fatigue.  Fun stuff again. It’s the beginning of the end, hopefully.  Follow up neuro appointments all scheduled for next week.  Going in with positive thoughts.  I don’t want to stroke out again.

Here we go.  Course four starts today.  I am nervous and excited at the same time.  Just get it done with already.  I am nervous about the end.  I am not really sure why.  I guess I just don’t want anything to go wrong.  No more delays.  No more problems or setbacks.  My threshold for good days is so low that is really sad.  I am not in the hospital=good day.  I didn’t feel like complete shit all day=good day.  I watched a law and order:SVU that I had not seen before(which is hard to imagine)=great day.  I had friends come over=amazing day.  It doesn’t take much to make me happy these days.  I think it’s probably a good thing. Humbling but good.  It’s really amazing the things we learn to live with or adapt to, are okay with.  Maybe some would call it settling but there is something to be said about not feeling like not wanting to throw up on yourself all day long.

So I annouced finally on Facebook about what I am going through.  I was so nervous about telling people.  Like somehow it wasn’t real if people didn’t know.  Like a really awful secret.  But it’s out there.  The words on a page for all to know.  Months ago I couldn’t even tell someone without crying and now it’s just out there.  It’s actually frightening.  I want to take it back and hide my secret again, forever.

Bone marrow results came back.  Not as great as I would have liked.  They did a flow cytometry test on the immature cells and they came back with signs of leukemia in them.  I still technically fit the medical definition of remission, which is having less than 5% leukemia cells.  I actually have less than 1% leukemia cells that show signs of leukemia.  So we are still forging forward with course four of chemo with no changes.  I have another bone marrow biopsy after this course, in approximately 51 days.  If there are still signs of leukemia in the bone marrow, then we will have to make some decisions about going forward with treatment.  When I heard this, I kind of went numb.  There is nothing we can do or have to do until after this next course so there is really nothing to “think” about.  But, realistically how can you not think about it.  I didn’t cry.  I wish I could have, maybe that would have helped.  I just feel numb.

I just want this to be over with already.  I have to say this, I don’t want to, but I have this horrible feeling at the pit of my stomach.  I have a very bad feeling.  This is the first time I have felt this way since this whole thing started.

Fuck you leukemia.  My body is rejecting me.  Killing me from the inside out.

No, I am not “special”.  There are a LOT of people who have cancer.  It is unfortunate really.  How do we have all this technology but can’t figure out how the own human body destroys itself?  I see and hear more than ever people telling me their stories.  Complete strangers comfortable sharing what has happened to them.  How do I become more comfortable with the words and with my new self?  Does the anxiety ever go away?  I get nervous doing the easiest simplest tasks.  The only place I really feel comfortable with going to is the hospital.  I get nervous just opening up my front door.  What if someone sees me?  What are they thinking?  Why, do I even care what some stranger thinks?  That is so unlike me.  Where did my confidence go and will it ever come back?  There are a lot of people who have/had cancer.  How are they so comfortable with these words and I don’t even want to talk about it.  Hearing the words come out of my mouth makes me cringe.  I can’t look at people when I actually tell them.  The strange word cancer is now more apart of my vocabulary than ever before.

Sometimes I get so caught up in where I need to go and be that I forget how far I’ve come.  I still sometimes forget that after my stroke I couldn’t tie my shoe or dress myself without help.  Now I am completely independent.  I am actually feeling okay for the first time in a while.  No chemo for the last two weeks.  I should get my bone marrow biopsy results this week.  Hopefully there are no changes and based on my blood levels all should be okay.  Fingers crossed and hope for the best.

Yup, it was as depressing as it sounds.  I was nervous to go, but glad I went.  I am trying to re-insert myself back into the real world so to speak.  I’m nervous about every new or new old activity that I do.  I lost my confidence but am trying to get it back and be comfortable in my new skin.

I have been going to the gym the last few days and it is finally starting to feel normal again.  I know people are staring but oh well what can I do about it?  An elderly woman came up to me and just flat out asked how I was doing and that she was a two time ovarian cancer survivor.  She wished me luck.  Unsolicited well wishes.  There is only so much in my power to gear up for the next round.